Wednesday, March 28, 2012

3 weeks out and doing great!


Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how at 4 she feels that way instead of just being plain old mad about it. We've talked with her a lot about it, so I hope she understands to the best of her little ability. Sometimes I think she understands it all better than I do! She's eating a little better this week too. The only thing not improving much is her sleep. She's up all night and moans and tosses and turns and climbs in bed with us and continues to moan and toss and turn. Last night I sorta lost some patience with it.. I love snuggling with her but I really don't sleep when she's in bed with me. But she gets so sad when I put her back in her own bed (which is about 2 feet away from mine). I think she's getting spoiled, but how do I not? I don't know what to do..hmm. Hopefully with a little more time she'll start sleeping more. For some crazy reason I'm still awake. Of course she's been sleeping great since 8...
I'm still just in utter and absolute shock and filled with joy that it's over. Anticipating this surgery was torture. Serious torture. I would lie awake and think about everything. I would remember her past surgeries and how tough they were then imagine this time around being so much harder. I'd worry about complications, I'd think of the worst case scenario. Then I'd tell myself to stop, breathe, and say a prayer to stop my crazy mind. It was hard in the hospital and there's been hard moments since, and people ask how I'm doing it, and I just want to make them understand that it dosn't really matter how hard it is, the happiness to have it over and done with a great outcome makes any hard day or moment okay. I don't think even in my wildest hopes and dreams I would've thought we'd be here 4 1/2 years ago. She was just considered too weak to survive. Everyone goes through hard things. Everyone. I was just talking to a dear friend today that is going through something hard. Completely different, but hard nonetheless.
I really believe that once everything is said and done and we go back to meet our Maker, that we will understand with perfect clarity how much were loved and looked after, and that everything we went through was for a very perfect and necessary reason. We will understand all the 'why's'. We will know we were never left alone. And above all, we will thank Him for it all. The test is to trust him while we are still here going through the day to day sometimes asking 'why'.


132 comments:

The Simmons Family said...

I am so thrilled that she is doing great!! Owen had about a six week adjustment period after his Tricuspid Valve repair last feb... sleep was the worst. It was right around six weeks and everything went back to normal. Hang in there. :)

So glad you went with the gtube again.. she looks fantastic!!

Lisa W said...

Oh my goodness, look at her smile! She has been through so much and it warms my heart to see her so happy. Thanks for your post. You're so right, it's amazing what we are capable of when we are faced with something hard. Faith is such a powerful gift! Your faith is an example to me and has been such a strength to Bela.

The Joslyn Family said...

That picture of Bela is about the cutest thing ever! I'm so happy to hear she is doing so well. You are both amazing!

Anonymous said...

My name is Melissa and I have a little guy who had heart surgery. I can so relate to how you feel.
You wrote beautifully at the end and said it so well about God and in the end. Spoken and well said.
After reading your story, you sound strong and like an awesome mom. You have angels all around you and your family!
I am from MN I have 4 kids and my youngest has DS and had open heart surgery. A friend of mine put me in touch with the Branton family site. I am so amazed at how well so many children can over come such tough situations. Tanner my son has GI issues as well and has gone through alot and still does and yet he smiles, plays and is the sweetest little guy ever. And when you speak about God, Angels and all of this, it's such a comfort and so right on.
Your little angel is beautiful and I pray for all children and their families when I pray to continue to give you strength and surround you with his arm and comfort you in all you do.
God Bless you on your journey
Melissa from MN

Auburn said...

You are so amazing! Love this post. I completely agree that we will go to meet Him someday and we will look back with amazement at how is individual plan, shaped and molded us, hopefully making us ready to be celestial beings!

Rebecca Davis said...

I came upon your blog by accident one evening doing music research..it just popped up..you all were just going through the surgery...it tore my heart out.. I put your blog on my FB to share with so many more...To see how well Bela is doing, and the strength your family shows us, builds up my heart & gives so many hope..thank you for sharing....

Just a week ago my grandmother had a stroke and was determined that her sight and speech was gone forever..she went home 3 days later walking out of the hospital with 110% recovery..speech & sight included..The power of prayer..Your family will be in my every prayers forever...I am walking tomorrow morning for The American Heart Walk in Fayetteville, Arkansas...I am walking in honor of Bela, my grandmother,and Garrett Uekman, Arkansas Razorback Football player,#88,who died suddenly in the fall with an undiagnosed heart condition... With much Love, Rebecca Davis

Would love to join FB with you :) http://www.facebook.com/profile.php?id=100001779713503

Nicci King said...

Yay Bela! Such a strong girl. So glad she is back to her cute, spunky self. Avery, sorry the sleeping hasn't come back yet. It will. Just give it time.

Alysia said...

What a brave and beautiful little girl. I just caught myself up on your blog and what's been going on and am in tears. So much has happened since I checked in last! I need to be better at that. Geesh. What a emotional ride you guys have been through lately. And she is just so brave. Amazing. Your family is amazing. We will be keeping your family in our thoughts and prayers that her recovery can be even more speedy now that she is at home.

likeschocolate said...

Congratulations! She is so adorable! So glad everything is going so well with little Bella.

Lisa said...

Thank you so much for sharing Bela's story... it's September now and I hope that she is still doing ok.

We have just been told that our unborn baby girl has Turners, and we already knew that she had critical aortic stenosis, which they fear will turn into HLHS. It's so good to read your story and know that both these things can be endured.

Thank you again for sharing - it gives me hope!

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